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HOME - Eiden's Story
Eiden is a special little man that suffers with complex medical needs including cleft palate, phagiocephaly, ventricular assymetry, osteopenia (previous fractures to ribs and currently a fractured spine), scoliosis/rotated rib cage, bilateral radioulnar synostosis, penoscrotal web, agranular neutrophils and platelets, marked hypermetropia, profound hypotonia, hypermobile joints, global developmental delay, sensory processing disorder, inability to control temperature/excessive sweating, gastroeosophagal reflux, gastrostomy fed, viscous secretions and apnea episodes at night. He has no diagnosis, even after numerous genetic tests and has fallen into a group of children called SWAN's (Syndrome without a name)
Hypermobility
Eiden is 2.5yrs old and a tiny little man measuring 67cm and 16lb 7oz which is average for an 6 month old baby.
He was born term but was immediately rushed to NICU and placed on a ventilator as he was unable to breathe for himself. This was the start for many struggles that he has had to endure.
There is a lot of medical jargon around Eiden's life but what does his condition mean to him?
Gastrostomy
Eiden struggles to eat orally due to a poor swallow so he is fed via a gastrostomy with specialist high energy milk, 16hrs a day. On a good day he eats up to 10 teaspoons of smooth puree which is suitable for a 4-6mth old.
Due to reflux and thick secretions Eiden is regularly violently sick and requires his airways to be cleared using suction. Without this he is unable to breathe and is at risk from aspirating vomit, which leads to chest infections.
Having a sensory processing disorder means he has a condition where sensory signals don't get organized into appropriate responses. We have been advised that Eiden is hyposensitive to sensory input which explains his need for constant stimulation which he will do with scratching or hitting himself with a toy.
He is globally developmentally delayed and only recently after starting with the Brainwave Centre, has learned to sit unassisted for approx 1 minute. He is unable to weight bear. This is because he is severely hypontonic and hyperflexible. He also currently has a fractured spine due to brittle bones, his scoliosis and rotated rib cage. As yet they cannot determine any appropriate treatment as they do not have a cause.
Due to the complexity of condition we regularly travel 6 hours (round trip) to see consultants at Great Ormond Street. He currently has consultants at 4 hospitals.
Hypotonic & Hyperflexible
Regardless of the daily struggles and pain he has to endure he is a happy boy and has the most beautiful smile.
Eiden will need intensive therapy for life to help him to learn to do the things that we all take for granted and this will mean funding suitable equipment and therapy sessions.
We began using the Brainwave Centre in Bridgewater in April and have seen such positive changes. We will continue to have 2-3 assessments a year but for this we need to be able to fund privately.
Also due to his small size we have found standard disability equipment has been inappropriate and we have to get items specially made or modified.
